People with Disabilities: 10 Tips for Preventing Healthcare Catastrophes

  • A woman is brought to the psychiatric emergency room where she is separated from her supporter. She gets scared and agitated because she can’t communicate, and is treated with physical and chemical restraint.
  • A non‐verbal patient couldn’t be discharged from the hospital because he wasn’t eating.
    The reason he wasn’t eating is that he needs someone to cut up his food. But nobody
    took a history of his functional needs, so a feeding tube was placed instead.
  • A woman with an intellectual disability who uses a wheelchair nearly died of cervical
    cancer because her doctor didn’t ask about sex. Her doctor assumed she didn’t need a
    pap smear.

These are just a few of the stories that our grantee Clarissa Kripke, hears from friends and patients with mental and developmental disabilities. Dr. Kripke, Director Developmental Primary Care at UCSF offered 10 tips to prevent such abuse when she participated in Abuse Against People with Mental and/or Developmental Disabilities: Physical, Sexual and Verbal Abuse in Institutional or Community Settings, a seminar sponsored by the People With Disabilities Foundation. Dr. Kripke’s tips:

1) Speak directly to patients. All people communicate. All behavior is communication. It’s our job to figure out how people communicate best and to support that. Observe carefully. Listen. Give time, a peaceful environment, and tools.

2) Presume competence. Assume there is a good reason why people do what they do and that and they have a right to be included in decisions that impact them. That means giving access information and education as well as support for people to make their own decisions.

3) Give people the tools to communicate about mistreatment. No matter how profound their disability, all people need a way to communicate when they are being mistreated. Sometimes this skill takes time, training and creativity to teach. Start early. Repeat often. Developing the tools and skills to communicate about mistreatment, boundaries and choices should begin on the first day of early intervention.

4) Teach people to set boundaries and protest. It isn’t our job to make people calm And compliant in the context of unacceptable circumstances . It is to help people maximize their potential and to participate fully. Compliance training is a set up for abuse. Compliance based behavioral treatments are often cited by self‐advocates as traumatic experiences.

5) Train families and professionals. People with disabilities aren’t the only ones who need training. We need to teach others how to listen and respond. Communication is a two‐way street. How we listen is as important as how our communication partners express themselves. Put people with disabilities in charge of developing the curriculum.

6) Take all complaints about mistreatment seriously. Investigate them, and protect people from the accused during that process.Even if it is clear that no abuse happened, following protocol teaches that complaints of abuse lead to appropriate action.

7) Give people opportunities to try and fail. That is how we learn. This should be done when the stakes are low, so that people have experience with natural consequences when the stakes are higher.

8) Get a history of baseline function. In people with communication challenges, illness presents as a change in behavior or function. If we don’t know a person’s baseline, we won’t recognize that there has been a change.

9) Respect personal boundaries. Offer assistance, but wait for a response and instructions before acting. Treat assitive devices such as wheelchairs and communication devices as personal space.

10) Give people access to their chosen advocates and supporters. Many people need support to communicate and to make decisions. Too often, we separate people from their support when they need it the most such as when they are in crisis or transition. This leads to errors, violations of autonomy, and misunderstanding. It is dangerous.

Dr. Kripke applauded the work of the Autistic Self Advocacy Network, who, with the support of the Special Hope Foundation, are driving state legislation to allow people with disabilities to designate a supporter to assist with communication and decision‐making.

More about the Autistic Self Advocacy Network.

The People with Disabilities Foundation, based in San Francisco, provides education and advocacy services for people with psychiatric and/or developmental disabilities. Their goal is to provide total integration of people with mental disabilities into the whole of society.

Learn more about them.

2017-06-20T17:13:37+00:00 August 19th, 2014|Blog|

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